First becoming unwell
This summary is about when people first noticed they were unwell. You can read elsewhere about the different diagnoses people had and their general experience...
Diagnosis of a mental health condition
A psychiatrist or a GP usually diagnoses a mental health condition. This is done by asking a patient questions (‘taking a medical history’), observing them, and comparing what they find to a ‘diagnostic criteria’. It is possible that an underlying physical condition can cause mental health problems like depression, or that depression can present with physical symptoms so other kinds of hospital doctors may be involved in diagnosis too. Getting a diagnosis was not a straightforward process for many of the people we spoke to. Indeed, some had never received an official diagnosis. Tracy said that even though she knew she had postnatal depression, no one told her this diagnosis, yet they gave her ECT. Sometimes people couldn’t really recall being told their diagnosis, and only found out that they had been diagnosed by reading their medical notes.
Most people had had a diagnosis of depression – including major depression, psychotic depression, bipolar disorder or postnatal depression. Many had received other diagnoses too such as anxiety, OCD (obsessive compulsive disorder), PTSD (post-traumatic stress disorder), personality disorders and schizophrenia.
Yvonne had had various diagnoses. She says shes more clued up now and finds shes able to understand how people work.
Dafydd thought his wife had minor episodes of depression through her life, but it got much worse after she retired. Eventually she was diagnosed with clinical depression.
Receiving a diagnosis
Receiving a diagnosis could be a relief if people felt the label helped things ‘fall into place’, or gave their particular kind of suffering better recognition. It took some time for Tristan’s wife to be diagnosed with psychosis as she mainly showed symptoms of depression. After his wife was diagnosed with psychosis, he felt that he could start to understand what was happening. Sheila found it useful when the psychiatrists explained her husband’s OCD (obsessive compulsive disorder) and why it might cause him to want to kill himself (see for more ‘Depression, psychosis and anxiety‘). Having been told she was a disruptive adolescent, Catherine Y said her diagnosis of depression ‘undid that’ and she felt better about herself, understanding that she wasn’t a disruptive person, and ‘wasn’t trying to do it on purpose’.
Although Cathy says labels aren’t always helpful, she found having a diagnosis could help her make sense of things she was going through.
Although Tania was initially diagnosed with depression she was later found to have bipolar affective disorder. For Tania, her diagnosis helped her understand why she could feel depression and joy at the same time.
Yet getting a diagnosis often took a long time, and sometimes health professionals had different opinions about the correct diagnosis, and the right treatment. Sometimes medical professionals gave treatments even though there were many different or uncertain diagnoses. Beattie was diagnosed with schizophrenia and later that was changed to bipolar. She didn’t mind being given a diagnosis, although she doesn’t think much of psychiatric treatments she received.
It was some time before Catherine Y received a diagnosis of depression. At first she was relieved, but then she didn’t know what it meant, or what treatment might be available.
Although Sunil was bipolar, he also had an under active thyroid, a possible physical cause of depression. He was given lithium for the bipolar, but thought this interfered with his thyroid problem.
Having a number of psychiatric labels could be confusing. Matt described his wife’s illness as ‘kind of depression and psychosis and anxiety and kind of a whole mess of things’. Suzanne wanted reassurance that she would get well again and was scared when they were testing her for epilepsy because she thought ‘oh there’s even more stuff wrong with me’.
Some found receiving a diagnosis was upsetting, particularly when they felt the diagnosis was serious or something that did not represent what they were experiencing. When David Y first heard that his partner had schizophrenia, he had held stereotyped views that people with schizophrenia were very violent. This didn’t fit with his wife’s behaviour, and the medical professionals explained it could actually mean her being very withdrawn.
Some were worried about how others would react to labels. When a medical professional announced at a child protection meeting that Cathy had schizophrenia, she said her in-laws were ‘absolutely horrified.’ They said she shouldn’t be allowed to look after her son. Kathleen, who had trained as a GP, was eventually diagnosed with depression, but she herself felt ‘ashamed of being ill’.
Jenny found it hard being given a label of Personality disorder. She sees psychiatry as inconsistent because the treatments she received don’t relate to that diagnosis.
People who had been diagnosed several decades ago were not always told directly about their diagnosis. Most felt that mental health problems were less understood then. When Helen had an unwanted baby that was put up for adoption in the 1970s, she suffered from postpartum psychosis. In response, her family married her off, and a doctor advised her to have another baby because they thought she wasn’t coping.
Albert wasn’t told he was schizophrenic and only found out when he was asked to sign a paper and saw the diagnosis there.
Finding out more
Sometimes people we spoke to were very unwell when they were first diagnosed with a mental health condition. Because of this, it could be difficult to properly take in information about a diagnosis. People had often come across the terms ‘depression’ or ‘anxiety’ in general conversation before their diagnosis, but had inaccurate or little understanding of what the terms meant. Finding out more about a diagnosis was important to some people, as they wanted to know what they were likely to experience, what treatments were available, how to help themselves, and the extent to which they could hope to get better.
When Suzanne was told she had psychotic depression’ she was surprised. She read up about it and found out the illness is episodic (happening at infrequent times) and now counts herself lucky.
Carers and family and diagnosis
Some carers felt they had been ‘side lined’ and not given enough relevant information to understand the diagnosis. When Carys’s daughter was diagnosed with a serious mental health condition twenty years ago, she got out books from the library to learn more. However, the books weren’t written for lay people and were hard to understand (for more see ‘Caring for someone having ECT‘).
Steve googled his wifes condition and found that things listed for the signs of depression’ were similar to his wifes illness. He found internet forums for carers interesting.
Depression, psychosis and anxiety
People we spoke to talked about what it was like to experience severe mental health problems such as hearing unpleasant voices that were not there,...